Neurodiversity - save millions and millions of pounds and harness talent today?

“The more I know, the more I realize I know nothing,” said  Socrates

 It's amazing when I look back over my career how right I thought I was and how wrong I actually was. The lens we look through can distort our perceptions and our judgments so often.

As a young doctor I was taught always to consider the differential diagnosis' ... what else could it be if x was not x.. This required taking a 'history' and gaining a complete picture. For example, we cannot assume someone has Dyslexia if they have reading and spelling difficulties unless we have also asked if the person has been to school. If we screen for ADHD traits, we need to also ask about head injury otherwise we can assume it is one thing when it could be something else.

"Progress is impossible without change; those who do not change their minds cannot change anything," said George Bernard Shaw

What I knew.....

Before my child was diagnosed at 3 years of age as having Developmental Coordination Disorder (DCD)( also known in the UK often as Dyspraxia) I knew little about DCD or other developmental conditions. I had had very little training as a doctor or in GP training about DCD despite having worked in pediatrics.

The diagnosis by the clinician was correct but there was no attempt to look more broadly about other areas of challenges that we know today often overlap including ADHD/ASD/language difficulties (and definitely there was nothing focusing on his strengths). Because 30+ years ago diagnosis were generally in silos and there was hardly any research relating to DCD.

You also had either X OR Y. A selected menu of items on the 'list' of conditions and in fact, at the time the rules were that you could not possibly have X AND Y. It was not amazingly until the Diagnostic Statistical Manual 5 came out in 2013 when there was a change in thinking by professionals that a person could have’ Autism Spectrum Disorder (as named in the manual) AND other conditions such as ADHD, Dyslexia, or DCD. This was because of the increasing evidence from epigenetics showing how there wasn't one specific gene for ASD and another for ADHD but many genes working in different ways.

I had seen many parents who were increasingly frustrated wandering around services telling and retelling their child's story and gaining one diagnosis or another but not taking a child-centered approach.

Co-occurrence is the rule rather than the exception

Professor Bonnie Kaplan in 1998 wrote an important paper about DCD not being ‘a a discrete disorder’ and was ahead of her time in questioning the way we looked at diagnosis and she said: ‘co-occurrence was the rule rather than the exception’.

Kadesjo and Gillberg in 2001 followed on and wrote a paper about ADHD overlapping with other conditions ( Kadesjo B, Gillberg C (2001) The comorbidity of ADHD in the general population of Swedish school-age children. Journal of Child Psychology and Psychiatry, and Allied Disciplines 42: 487-492.)

We know - we really know - that children and adults with neurodiverse traits don't fall into neat categories but we constantly seem to forget this and we continue to assess for Dyslexia, Autism, DCD etc. in isolation. This wastes loads and loads of time and money.

There is now extensive evidence that Developmental Disorders(conditions) /Neurodiversity co-occurs often e.g. Developmental Co-ordination Disorder (Dyspraxia), Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Dyslexia, and Developmental Language Disorders (DLD).

Services in silos

Services are often delivered for single conditions separated in space and time. Consequently, parents, children, and adults can have poorly integrated care, and transfer from one service to another costing time and money. They often feel confused as they are given different diagnoses and varying support which is more based on the condition than the person.

Present systems struggle to determine who is the most severe, complex, or whose symptoms and what will determine the greatest impact for the person and their family in the short and longer-term.

Additional financial pressures on services, along with varying waiting lists ( some up to 5 years long) and lack of provision for some conditions, are driving the need to develop cost-effective solutions. This is especially true as we know that Neurodiversity is not something that is just present in childhood and disappears when you get to 16 years of age.

With 1 in 6 children and young people having one or more neurodiverse conditions(but not all with diagnoses) then this is a lot of numbers to manage effectively!

How do we save money and reach more children and adults?

There is a strong rationale for potentially delivering more equitable provision, involving all stakeholders, by placing services in the community, increasing access, and attempting to match children and adults to the most appropriate clinicians across all developmental disorders.

In the last 15 years with esteemed colleagues, I have been writing about the need to consider integrated services, common language, and clear pathways.

We came from it from different perspectives :

• What do professionals know about other developmental conditions apart from the ones they look for?
• Do they consider co-occurrence in their day-to-day practice?
• What could working together look like?
• What do other places do?

In 2005 I asked...

Do teachers know more about specific learning difficulties than general practitioners? (https://onlinelibrary.wiley.com/doi/abs/10.1111/j.0952-3383.2005.00384.x)

In 2007 with colleagues  Baudinette and Sparks we did a survey of knowledge and confidence: 

Survey of Paediatric Occupational Therapists' Understanding of Developmental Coordination Disorder, Joint Hypermobility Syndrome and Attention Deficit Hyperactivity Disorder(https://journals.sagepub.com/doi/10.4276/030802210X12813483277143)

In the same year, we asked whether other professionals should consider DCD (Dyspraxia) when doing an assessment for ADHD as 40% of children have both present!

Kirby A, Salmon,G, Edwards,L (2007) Should Children with ADHD be Routinely Screened for Motor Coordination Problems? The Role of the Paediatric Occupational Therapist.The British Journal of Occupational Therapy, 2007, Vol.70(11), pp.483-486

In 2008, Dr. Gill Salmon and I discussed the needs for services to be in schools for CAMHS:

Salmon, G., & Kirby, A. (2008). Schools: Central to providing comprehensive CAMH services in the future? Child and Adolescent Mental Health, 13, 107-114. doi:10.1111/j.1475-3588.2007.00468.x

In 2012 with colleagues I completed a review for the Welsh government about the overlap with Dyslexia and other conditions along with other papers including how different the tools being used ( with different cut-offs and measuring different things) to diagnose Dyslexia for example and how these varied hugely from place to place. There were constant apple and pears situations ( i.e. different tools measuring different things for Dyslexia) and no consistent standards.

In 2018 Dr. Deb Judge and I wrote a full article about reversing the inverse care law which highlighted the real co-occurrence and the need for clear pathways.

https://www.semanticscholar.org/paper/Addressing-the-Inverse-Care-Law-in-Developmental-Kirby-Judge/c363db2c41b648e2d57b13d88052a030e7701160

In 2019, with Dr Mary Cleaton I asked "Why do we find it so hard to calculate the burden of neurodevelopmental disorders?"

We can save millions of pounds

Specialist services in the UK are generally delivered by pediatricians, allied health professionals and child, and adolescent mental health services, who are usually based in hospitals or specialist clinics. Children and their parents gain a referral through gatekeepers. Routes into services may vary from area to area with some areas in the UK have developed pathways into the services.

Closed doors, open doors, and invisible doors

Social and family factors may make it harder for some families to seek help or access it even if they are referred. Clinical services, when based at a hospital rather than the community, may make it harder for some parents to attend because of family and social barriers. Arranging childcare or losing time from a vital job to spend hours traveling back and forth to a clinic may result in non-attendance, which may be interpreted as a sign of disinterest. Poor literacy skills may make it harder to read relevant information that is sent to them or even know there is a service available or be able to ask the questions they need to ask. We see a huge discrepancy in how challenges are presented - with more children who are in poverty gaining a diagnosis of SEMH needs (Social Emotional Mental Health Needs) than ASD/ADHD/DCD/DLD and ending up being excluded from school... and this can be the start of the school - to - prison pipeline.

Parents may also be neurodivergent but not had the support or been diagnosed themselves resulting in cumulative challenges. Looked After Children (in the care of the state) despite the recognition of 9x higher rates of Special Educational Needs are less likely to be identified and assessed as they may move from area to area or miss out on being in school...( more on this in another blog to come!)

Knowledge and Training

Knowledge of different conditions will vary depending on the training available. Awareness levels of conditions such as ASD have increased in the past few years and seen legislation put in place to support individuals e.g. in England, the Autism Act. However, the level of awareness remains lower for conditions such as DCD/DLD and ADHD despite them being present often for many children and adults and..... in reality, more common!

Where can we start?

Providing knowledge and awareness of typical developmental milestones across cognitive domains by all persons working with children and adolescents would seem a sensible approach. This needs to include early years’ professionals, teachers, social workers, youth workers, health visitors, and GPs.

If this is undertaken then there is more chance of triggering an alert to recognize developmental challenges, and to do something such as providing practical advice or generating a ‘red flag’ for further investigation. Having this in place is particularly important for parents who may be less aware that late walking or late talking may be a problem. They may have had similar challenges themselves when young, and not had this identified either.

A common language can help - so we all mean the same thing - the parent is hearing different terms used in different ways by different people- and this is really confusing for all- specific learning difficulties/developmental disorders, ASD/Aspergers; DCD/Dyspraxia, etc..

Accessible forms of information

You cannot engage in a system if you cannot understand it. This is essential otherwise lack of engagement is so much about disadvantage and is unfair. I checked the readability of website the other day for applying for an EHCP and you needed to have a reading age of a Year 12 pupil!!

Blandford (2017) in her book ‘Born to fail’ also describes possible mechanisms within the education system, which may contribute to missing opportunities for identification. This means some children may have teachers that are less well trained, parents who are less vocal, or less informed to trigger further support.

Triggers for further support

Determining a set of red flags for action seems to be sensible. Early identification of these ‘red flags’ should ideally alert the clinician to screen for challenges across other domains, especially in higher-risk groups.

I have coined the term ‘learners ( children) of concern’. While population screening is not a consideration, screening higher-risk children for developmental disorders/conditions may be more cost-effective e.g. those in care/LACYP and those who have been excluded from school for behavior, for example, I see as a good starting point.

This may also include the following for example who we know have a greater risk factor for having developmental delay or difficulties of one or more kinds:

·    Premature children

·   Children with a family history of speech and language delay/other developmental conditions

·   Reported parental concerns

·   Teacher concerns

·   Significant Adverse Childhood Events and Fetal Alcohol Syndrome

·   History of Traumatic Brain Injury

Reducing the barriers to entry

The barrier to entry to gain support for some parents is high and can be is often related to reaching a set of scores in an assessment their child has to undertake. If the child doesn't reach a threshold a diagnosis is not given. However, this may not be related to the overall level of functional impairment of the individual or their needs. The threshold for diagnosis may sadly in some cases be a means of managing service delivery and creates a bottleneck.

A real cost for not supporting children and adults

Delay in referral and support has a cost. It may mean the person pops up at a later point and has now got additional mental health challenges, low levels of educational attainment, or sadly is in a criminal justice setting (thus costing governments twice as much). 

If a family doesn’t know where to go this can result in new ‘challenges’ emerging including parents losing jobs, and relationship breakdown.

The impact can be on a parent giving up their job to cope with their child's needs. Cleaton, Lorgelly, and I in 2018 published work relating to costs- monetary and on emotional wellbeing for parents of children with DCD/Dyspraxia:( 3-5% of the school population)https://www.ncbi.nlm.nih.gov/pubmed/30536221

Negative behaviours can emerge with increasing self-awareness of difficulties by the child or young person. The primary challenge may become hidden and then can be not considered. In addition, in desperation where parents have some personal funds, they may end up choosing alternative pathways for support where there is often less censorship or control over what takes place and the probity of the service delivered. As a consequence, the promotion of cures and ‘quick fixes’ are seen as alluring to desperate parents faced with no alternatives.

We MUST work together

Despite an aspiration for a holistic, integrated care pathway for children and youth with neurodevelopmental disorders (NDD)/conditions/neurodiversity, in reality, putting inter-agency care pathways into practice has proved problematic until now.

One community-based approach that has been developed in Canada, the Partnering for Change (P4C) model was developed because of a problem managing long waiting lists for assessment of DCD. Its key approach is developing a partnership between the therapist, educators, and parents to enhance children’s participation. This has been developed with a focus on children with DCD/Dyspraxia. An important element of this is that the occupational therapists collaborate and coach teachers in context, right in their classrooms. This results in a gain in confidence and a greater ability and capacity to recognize, accommodate, and support the children who are most commonly referred to school health services. It also skills the teacher to manage challenges they may see with other children that wouldn’t necessarily be referred but are nevertheless impacting on functioning.

I see this approach could be one that is extended to include other health care professionals such as speech and language therapists and would result in the up-skilling of teachers and teaching assistants in schools. In 2015, I was part of a review with colleagues to consider the best management principles for clinical practice in DCD/Dyspraxia and this again highlighted the need for graduated approaches and clear pathways.

We need to upskill community workers

Little work has focused on upskilling professionals such as youth workers, cub scout leaders, youth offending teams, and social workers who work with neurodiverse children and their families to ensure they have some skills and knowledge about how to refer for advice and guidance.

Taking a systemic approach

In school this may be a whole-school approach with nurture centres in each school (not exclusion units) changes the paradigm of support with interdisciplinary teams coming into school and working together to help the child as a whole and upskill staff in the school. The nurture centres could provide a real positive hub for parental training and community links too. They can provide a place also for teachers within the school to gain advice and guidance in an ad hoc manner and act as a 'drop-in' advice and guidance centre a bit like Citizens Advice!

We can save millions and millions of pounds if we can stop 1 in 3 people who have neurodiverse traits from ending up in the criminal justice system. We know whom they are with 1 in 4 having been in care and 2 out of 3 having been excluded.

We can do better and we need to!

Do-IT Profiler has school web-based package for screening for ‘learners of concern’ and also launched a Parent Profiler last week. It starts to take a whole-child approach to supporting each child and has the means of upskilling staff alongside the information gathered about neurodiversity to increase confidence for all.

If you are interested to learn more go to: https://www.doitprofiler.com/sectors/do-it-in-education/schools/ or email me at [email protected] for a chat to start working together today.